Faith shares her story about her older brother Matthew who has CLN1 Batten disease

I have done some research over the years and have never known of an individual with Batten disease getting to the age Matthew has.

When Matthew started losing his sight aged 10, we followed the usual route of taking him to the opticians. However, they couldn’t find an issue, so off we went to ophthalmology who after lots of not so nice tests also couldn’t find a problem. We then got referred to neurology, and were blessed with the most lovely, attentive neurologist, Dr J, whose knowledge gave us answers and led us to a diagnosis.

In 2006 Matthew had his blood tests sent off to Great Ormond Street Hospital, they confirmed the unthinkable, they retested to confirm, but the results were CLN1 infantile Batten disease.

Matthew was 12 years old and we were told that ‘children with this condition often don’t make it past the age of 12’. Being told you’re on borrowed time straight from diagnosis is indescribable and heart shattering.

Whether its right or wrong, from diagnosis you start to grieve, grieve the life they could have had and the future that is being stolen from them.

Matthew has slowly declined, lost his sight, ability to walk, talk and more. But I still get glimpses of my big brother that shine through and I cherish them and store them in my brain praying that they will never fade and carry me through as things get worse.

We did not think this would be something we would ever be saying, as our mum would say. It’s another ‘Matthew miracle’ and it sure is. 

Here we are in 2024 and my amazing big brother celebrates his 30th birthday!

Although he has this terrible illness, for a very poorly man, he is a tank! I am so proud of the strong man he is, and we are so grateful to have been gifted with so much time.

I truly believe it’s the dedication and devoted love from my parents that has helped de-ice the slippery path that Batten disease takes us down, that has got us this far.

Thank you for taking time to read this.

From Matthew’s very grateful and proud Little Sister.